A Matter of Dignity

by Andrew Potok

  It would be convenient to say that it was just the Nazis who pursued this, but, though it became state policy in Germany, its attraction and at times implementation existed everywhere, in the so-called underdeveloped world as well as the so-called developed one. The susceptible mind is always there, ready to act in the name of an ideology, or God's will. When people can be convinced that whatever happens to be the reigning social order is the natural order—that the inevitability of things as they are, the existing rank and privilege around them, derives from the will of God or the intent of nature or both—it is a prescription for justifying the annihilation of everything that does not conform to that order or those beliefs.

  During the second half of the nineteenth century, race began to be cast as the primary moving force of human history, racial vitality seen as the essential ingredient leading toward world primacy. As science became increasingly important in European culture, the justification for this no longer needed to come from religion. Biology could then be counted on to prove the intellectual inferiority of any number of groups: Jews, blacks, women or the physically or mentally disabled. Biology rationalized the belief that criminality is inborn, or that schooling of women would shrink their ovaries, or that the social station of certain groups, such as those reduced to slavery or peonage, is natural and inevitable.

  “Feeblemindedness” defined a wide range of mental deficiencies and deviant behaviors, not only among the people with schizophrenia, manic-depression or epilepsy but among the depressed, among prison inmates and residents of homes for wayward girls, among truants, paupers and prostitutes. Immigrants everywhere were considered as root causes of this menace, threatening the rapid decline in the quality of a nation's genetic stock. It was claimed that feeblemindedness, alcoholism, poverty and criminality were transmitted by heredity and were uncommonly prevalent among immigrant ethnic groups with their shiftlessness or volatile tempers. Unless immigration was limited, it was claimed, the American population would become “darker in pigmentation, smaller in stature, more mercurial.” Even Margaret Sanger, mother of family planning, wrote that it was especially the poor and foreign-born who needed contraception, so as to reduce their “inferior” births. For her, “feeblemindedness” was a fertile parent of degeneracy, crime and pauperism. She warned that those who were least fit to carry on the race would increase more rapidly than people of quality and would divert funds from nobler causes to those who should never have been born.

  American social Darwinists saw, and often still see, in evolution by natural selection a scientific guarantee of cosmic optimism, where those who survive are by definition those who are also most fit. Those who are alleged to be weak or different, physically or mentally, are expendable, unworthy of equal opportunity or, at times, of life. Darwin's work is thus seen to justify the moral superiority of industrial capitalism and the competitive entrepreneurial spirit. Economic competition is considered a natural form of social existence, a law of nature and a law of God. In the 1930s, going further, the Germans stressed the need for state intervention in an effort to stem the degeneration of the human species. Because it was feared that the poor and the misfits were multiplying faster than the talented and the fit, medical care for the former was seen as destroying the natural struggle for existence, so medical intervention was often denied those segments of the population. In promoting the good of the race, the Germans felt they had to put an end to allowing weak and inferior elements in society to prosper and procreate. Intelligent “racial hygiene,” they thought, should eliminate the need to struggle for existence. The mentally ill were first among the undesirables. This, of course, led to mass annihilations in hospitals and concentration camps.

  People found in Darwin what they wanted to find; thus racial hygiene became recognized as a respectable part of German biomedicai science. The idea saw no ideological bounds, crossing easily into the progressive as well as the reactionary camp. Among American eugenicists, hardly out of step with the public at large, the sterilization of psychiatric patients was avidly supported, as it was by the German Communist party. A long collaboration between American and German scientists thrived before, during and after World War II, with American eugenics societies favoring Nazi biomedicai policies and giving them substantial support. Even after the war, American eugenicists came to the aid of their murderous colleagues in Germany, helping with de-Nazification and finding jobs for them, the whole lot no longer answering to “eugeni-cist,” now calling themselves human geneticists.

  A biomedicai vision of national hygiene may begin with the killing of faulty infants, as in Germany, and as has also been suggested by Peter Singer at Princeton, but it can, and has, ended with the killing of any life deemed unworthy of living. It is also interesting to consider this rage for cleanliness and “purity” in light of the human genome project, which dreams of perfectability, a disease-free, disability-free humanity, a more efficient and happy workforce, the conquest of death.

  Even if the genesis of mental illness should turn out to be primarily genetic, it is the product of many genes whose locations and interactions are largely unknown. Schizophrenia has been thought to be located on this or that chromosome, each site proving to be wrong. Indeed, it may be that its genetic component has been woefully exaggerated, the multifarious environmental causes largely unstudied. For all the hope and hoopla that have been given the human genome project, its actual usefulness in putting an end to mental illness as well as physical illnesses with a genetic component is considered distant at best. Even the most optimistic studies admit that the interconnections among the genes presumed to be involved with heritable conditions may never be known. Certainly current scientific research is nowhere near knowing them. A lot of the optimism about the human genome project comes from the fact that one disease, Huntington's disease, seems to have a single gene causing it. But all the either/or questions deny the truth which is that life is usually very complex, there are no easy decisions or answers, there's not much that's predictable, and every human being is different.

  For many people, confronting a mentally ill person is a dreadful prospect. It's hard to resist the impetus to flee, to marginalize or dismiss or to look from a safe clinical distance. Our built-in early-warning system alerts us, making us suspect anyone who is not like us. Many of us cross the street, turn our heads, do anything so as not to engage. We are alarmed by slurred words, tics, by the terror in another person's eyes. These signs tell us not to bother, to turn away, to flee. We know we won't understand and the effort to do so seems herculean. Not only that. Many of us have a secret terror that some form of mental illness lurks deep within ourselves, at times appearing in our nightmares, in our manifestations of irrational rage or hatred. The abyss that stares at us when reason vanishes is atavistic, terrifying. The separation between “us” and “them” is not as wide as we had hoped.

  Jay Neugeboren, who until recently lived and taught in Northampton, an idyllic, progressive, enlightened college town in rural Massachusetts, told me about a group of townspeople who had demanded that the city stop a local human services agency from renovating a dilapidated building under a $600,000 grant from the Department of Housing and Urban Development. The money was intended to transform the building into six one-bedroom apartments for people with psychiatric disabilities.

  The local newspaper noted that news of this had inflamed people in the neighborhood. A city councillor from the ward was quoted as saying that people were so angry that they began organizing a property-tax strike. “I've never seen neighbors so upset since a 1977 rock concert,” the councillor said. “My neighborhood and ward feel betrayed by the city.”

  “Social programs,” one woman said, “must not be allowed to come in and basically rape our neighborhood.” Another resident had consulted a lawyer about putting his taxes in escrow until he could be assured the apartments would not be built. He and other residents of the ward formed a committee to raise funds, hire a lawyer, file complaints in superior court, meet
with their representatives in Congress, even publish a newsletter. As a result, HUD had second thoughts about the suitability of the project.

  The strong feelings against group homes are all about a feared decrease in property values and an increase in crime rates, though studies conducted to determine the validity of these fears have shown that no change in either rate has been found to exist. “If we were really interested in reducing violent crime rates,” the head of the social service agency told the Northampton city council, “we should restrict the number of unmarried males under the age of twenty-five. That's the only group one can say is more violent than any other in America. It is certainly not mentally ill people, who as a group have little or no correlation with violent crimes.”

  BROTHERS AND SONS

  Even though Jay Neugeboren has a rich and busy family and social life, though he is kept busy teaching and, more than anything, writing, he devotes a tremendous amount of time, energy and love to being the advocate and chief support to his brother Robert. For forty years he has been monitoring his brother's often short-lived, sometimes catastrophic therapies, pushing the mental health system toward more humane responses to the needs of people with severe mental illness. For all that time, Jay has been trekking to a seemingly endless number of institutions in and around New York City, to wherever Robert happened to be housed—to Hillside, Creedmoor, Elmhurst, Gracie Square, Bellevue, King's County, Riker's Island, Mid-Hudson Psychiatric Center, South Beach Psychiatric Center among others.

  “Given the forty years of psychiatric illness and the horrors that the mental health enterprise has inflicted on my brother,” Jay Neugeboren says, “the true miracle and mystery is that he has survived with his humanity intact. After all the failed therapies, the shotgun drugs, the punitive incarcerations, I don't know what has enabled Robert to retain his generosity, warmth, intelligence and humor.

  “Recently,” Jay tells me, “the psychologist from Bronx State Psychiatric Center called me to say that people are cracking up about Robert, who was asked to bring in a urine sample. He filled up the little cup, started to give it to the nurse, then took it back and said, ‘I'd like a receipt.’ It's extraordinary that given what he's been through, he can retain a sense of humor about the very conditions that have been the cause of his pain all these years.

  “My interest in Robert will only increase,” Jay says. “It isn't based on the sadness of his life but the wonder of it and the depth of his resiliency. I came to feel this partly as a reaction to the stereotypes. It was my anger at the world's notion of what it means to be mad, the way the world treats people who have been labeled as schizos, nuts, head cases, lunatics. You say those words and then nobody has to think any more about it. It puts the person into another, an unthinkable, category. So I respond by identifying with Robert. He's as interesting, complex, as human in every possible way, from the most trivial to the most profound, as anybody on the face of the earth. He has a very unenviable life, that's all.”

  Jay Neugeboren is a teacher and writer, most of whose thirteen books are novels. The last two, however, are nonfiction, Imagining Robert, a memoir of his schizophrenic brother, and Transforming Madness, a broader look at psychiatric illness. Imagining Robert, his eleventh published book, reached the biggest audience of all his books, but before it found a home it was turned down by forty-one publishers.

  “I've always been a fighter,” Jay says. “My mother was a bear, wouldn't take no for an answer, persevering, determined and willful, while my father was the opposite. I didn't want to be like him so I do everything not to fail. Fear of failure keeps me going.”

  “But forty-one rejections,” I marvel.

  “I've always enjoyed the fight,” he says. “Nowadays the reaction isn't as fast, I won't pop up the moment after I've been knocked down, I'll wait for the count of seven. Still, I have a basic faith in my talent, my gift, my work. Also,” he adds, laughing, “it's the song of the Jews. They can try to stop us or get rid of us but they won't get us all.”

  Judaism has played an important part in both brothers’ lives. Because they were brought up together in an observant Jewish home, it gives them common ground regarding things like food and holidays. “Robert often says, ‘Let's say Kaddish for Dad,’ and he gets all teary,” Jay says. “It's one part of our childhood we can go back to and share. Observing the Sabbath still means a lot to both of us.” When Robert visits Jay on a Friday night, they light candles together. It conjures up not religion but aspects of family life, what it was, what it wasn't, what they wish it could have been. Judaism is a religion that is celebrated mostly in the home, not the church. “Since I'm not a believer in God or prayer,” Jay says, “it's been a gratifying part of my life, something I connect to easily. In short, it's a world we share, and by the way, being Jewish has taught me a lot about oppression. It's not a leap for me to understand the oppression of the mentally ill.

  “In writing Transforming Madness, one of the humbling things was meeting so many people who remind me that being distinctly privileged, whatever I've been through is nothing compared to the dark nights of the soul these people have to face all the time. How some of them have recovered is very inspiring. Meeting them, I've come to realize how far down people can go. I marvel at how in their despair, while having the shit kicked out of them, sometimes even collaborating in their own failures, they can survive, get back on the road and have a full life. I don't know where this comes from but it's remarkable.”

  Robert's diagnosis has changed frequently over the years, depending largely on which drugs have been successful in keeping him calm and compliant. His diagnosis was schizophrenia when enormous doses of thorazine and Stelazine calmed him, bipolar when, for short periods of time, lithium worked. He was manic-depressive with psychotic symptoms, or hypomanic, when the anticonvulsants Tegretol or De-pakote, or some new antipsychotics or antidepressants like Trilafon, Adapin, Mellaril, Haldol, Klonopin or risperidone showed promise of making him cooperative; and he was schizophrenic (again) when various doctors promised cures through insulin-coma therapy or electroshock therapy or a long menu of psychotherapies: group, family, Gestalt, art, behavioral, milieu, psychoanalytically oriented psychotherapy and more.

  Most often, the more chronic his condition, the more he was treated solely with drugs and received no therapy at all. “The history of the ways in which this past century has dealt with those it calls mentally ill has, for forty years now, been passing through Robert's mind and body,” Jay says.

  Robert has been in and out of the locked wards of hospitals where he was straitjacketed, four-pointed, confined in bare rooms on sheetless beds. Telephone privileges, outdoor privileges, smoking privileges and visitors have been sporadically denied him as punishment for his “crazy” behavior. The behavioral, punitive model of limits and boundaries, which included beatings, was largely relied on for teaching compliance, punishment for mental illness rather than therapy for it. “And the prescribing psychiatrists knew nothing or little about Robert's history or feelings,” Jay says. “This is not enhancement but containment, infantilization and neutralization. What drives me crazy is that the feelings, thoughts, memories, fears and hopes forming Robert's character and identity exist but that these professionals know nothing of his evolving and becoming. They know only the chemicals, the dead end of a scientific materialism. They deprive Robert of his humanity. What kind of madness is it to throw a bunch of drugs at somebody and hope that some of them will work?” Jay asks. “How different from witchcraft is this?

  “They do all of this partly for housekeeping purposes but I know they also hold on to the nagging concept of cure in the back of their minds. Don't they know that, no matter what they do to him, Robert will not get well? The fact is that practically none of us get well. Don't they know that's the human condition?”

  Adaptations that enhance mobility and independence exist for most physical disabilities. A prosthetic leg can get a person moving again, a cane or guide dog open the world to the bli
nd, as do screen-reading software and braille. Though economic opportunities are scarce, most of us who are physically disabled have the technical possibility for an independent life. But unless one is a particularly high-functioning person with schizophrenia, autism or other serious mental illness, chances are that he or she will not only never get well but will be functionally dependent on a network of families, case managers and attendant care throughout life. Still, whether schizophrenic or quadriplegic or blind, it's highly unlikely that any of us will “get better.”

  I tell Jay the story of my first book's encounter with Hollywood. The producer, Art Linson, said he loved Ordinary Daylight and wanted David Mamet to write the screenplay, but Mamet doubted that Linson could inveigle the money from Warner Bros.

  “Okay, let me get this straight,” Mamet said. “You are going to march into Warner Bros, and say, I want to make a movie about a guy who goes blind and doesn't get better.”

  “Yes,” said Linson.

  “Make sure you mention that he doesn't get better.” Mamet was sure Linson was going to get tossed out of the office.

  “I will,” Linson said.

  “Believe me, they'll never get it. One more time,” he said. And in unison they repeated the pitch, “He starts to go blind and he does not get better.”

  Though Mamet wrote the screenplay, the movie of Ordinary Daylight was never made. And I kept going blind without getting better.

  Brothers and madness appear frequently in Jay Neugeboren's work, as do all kinds of family insanities. Most of his novels deal with people on the margins, blacks, Latinos, gays. “Demeaning someone for something not in their control has always made me furious,” he says. “I even have trouble using the term disability. To me the spectrum from so-called ability to so-called disability merely points out aspects of the human condition. The only real difference is that some of these lives are more difficult to endure than others.”